Not sure where to start

Random,
I never said that surgery doesn't work; for low risk cases it works 85% of the time which is an excellent response. If you don't agree with my analysis of why salvage radiation works and is used in the case of surgical failures then you should be able to provide some other valid reasons why it is used. The fact is pretty clear that if salvage radiation is necessary and works, then radiation as a primary treatment would have worked better. Why is this concept so difficult to understand?

Also worth mentioning, if a patient has cancer that has been identified involving the nerves or close to them, in the APEX, a large anterior tumor or any signs of extracapsular extension they will be better served with radiation, as all these areas are identified with a higher probability of surgical failure. Low volume tumors in the P zone are easily treated with either surgery or radiation and this is where the majority of tumors are located.
It is important that a patient with a high volume tumor be futher staged with a 3T MRIS or a CDU before choosing a treatment in order to identify tumor location and size so a more informed decision can be made.

davidg,
I'm not missing that point at all. I know that most patients prefer surgery for a number of reasons, including the fear of radiation. I'm just laying out the main causes for surgical failures so patients can be more informed. To me having radiation as a backup is not a well thought out reason as is the reason that there is only a complicated surgical option available for a local radiation failure
To be fair I'll also state the reasons for local radiation failures:
1. Too low a dose, especially for higher grade large tumor volumes.
2. Improper dispersion of seeds leaving "dead spots".
Local radiation failures are rare and most radiation reoccurrances are due to systemic disease.
Options to local radiation failures are reseeding with a different isotope, HDR Brachytherapy, cryosurgery, cyberknife and salvage surgery and all have the same results, 30%, as salvage radiation after surgery. Salvage surgery is rarely used because of the difficulty and complications, but is the only option ever discussed by doctors recommending surgery. The other options are much more commonly used and recommended. The main reason these salvage options are rarely discussed is the fact that local radiation falures are rare and these options are rarely used when compared to the high use SRT. The statement that only surgery gives you a second chance is false and misleading, yet many patients believe this because that's what they are told and unless objective information is presented they will continue to restate this myth. Being told that salvage surgery after failed radiation is difficult while failing to mention the much more commonly used salvage options and the similar success rates is at best misleading. You have to wonder why this reason is so commonly used? It sounds very logical and believable until you start peeling back the covers.
When patients better understand what causes local failures from the various treatment options and ALL the salvage options available to them they can make more informed decisions and not fall for the used car sales pitch that "only surgery provides a second chance for a cure". Sounds good but doesn't hold water under examination. If you have a local failure, either surgery or radiation it is most likely because your doctor has screwed up.

I forgot to mention that when I spoke to my urologist today I asked what my percentage was on the one core that came back positive. He said it is <5%, so out of 28 (or 24, I don't remember) samples, one came back <5%, G(3+3), up near the apex, and an adjacent core was listed as undetermined/suspicious.

cwren: In reference to your post:"Please don't misunderstand my ignorance on this subject with disagreement. I don't even know what I don't know. If I get surgery and it comes back in, say, 15 years, wouldn't radiation at that point give me a few more years? Whereas, if I have radiation now and it comes back in 15 years, wouldn't my options be a lot more limited? I'm just trying to understand the implications of each route. To be honest, every time I think about it, I feel like someone has just punched me in the gut."

If you needed salvage radiation therapy in fifteen years after surgery, it is highly likely that you would be disease free for another fifteen or twenty years.


With your low grade of cancer and only one needle in a 28 needle biopsy, don't rule out AS.

What I take from the discussion is that with either surgery or radiation as frontline treatments, cwren is looking at a very favorable success rate. What can't be determined is what level of radiation could cause problems down the road, particularly if additional radiation is needed for either this or another disease. The body's tolerance for radiation is finite before problems come into play. The same could also be said of surgery, however. If surgery is not successful on the first go round, surgery is generally not a follow-up treatment here. I think cwren's concern is overexposure to radiation thru his lifetime, not about it's effectiveness in treating his PCa.

cwren, you should be confident with your numbers that either of these treatments will likely be successful... given the skill of the Dr's you choose to execute the treatment. But from this younger guy, radiation for a 40 something carries additional risks down the road and thus the consideration for this type of treatment is different than it might be for a 60-70 year old guy.

Charles, once again...have you had your slides re-read by an expert prostate cancer pathologist?  You may not have cancer at all.

And, I will be blunt and probably take some heat for saying this but if you opt for surgery for a 1/28-5%-G6 I would personally think you're off your rocker.

Tudpock (Jim)

Cwren,

I hope by now you are a little less concerned. You have plenty of time to do the right thing for you. Just keep reading here. You will get a lot of opinions....but also some insights and perspectives that will be very helpful in your decision making process. Best wishes,

Joe

Davidg,
The only reason I would recommend AS in Cwren's case is because the cancer sample is so small and the number of cores taken so high as to greatly reduce cancer being found elsewhere. He basically had a saturation biopsy. In these cases there is a probability that it not cancer at all or the tumor is so small that it just goes away on its own. This happens a lot with 1 core <5%. AS does not mean never being treated. It means careful monitoring and treating at the 1st signs of progression; you would monitor it just as if Dxed with HGPIN. With a cancer that small there is little risk in watching it for months or years. Cwren does not feel that AS is for him, and that's fine as he has many other options, but he should at least look at it as an option. If I had his stats it would be a no brainer for me, but I'm not him. I'm very comfortable living with cancer, because as long as I know it is still in my prostate it will never hurt me. I'm not by nature a risk taker, but with Cwren's stats there is little risk and a lot to be gained with AS as he could easily be treated at a later data with the same results and buy a few years of QOL while he is still young. The technology of radiation and diagonostics is improving at a rapid rate and 5 years from now there will certaintly be more effective treatments than are available today.To me this is a reasonable approach with little risk; others like yourself may consider the risk too high. I think his urologist is giving him good advice as most urologists would not recommend radiation. His urologist is taking in consideration the possible side effects of surgery and is definately looking out for his interests.
I think that all patients should have ALL information concerning their options and a through review of the benefits and libilities of each option along with an explaination of why a doctor is recommending a specific option over another. He should also talk to doctors in other fields of practice as most doctors know their field well, but when a urologist talks about the various forms of radiation options he may not be well up to date on the newer protocols. We see misinformation, like I discribed in an above post, given all the time.
I think information given out by patients on this and other forums is an excellent source of information. Many patient would not have heard of MRIS, CDU, USPIO or Combidex scans, PCA3, Chlorine 11 scans or even AS if it were not for patients posting their experiences. Zufus has posted many things about alternatives to HT drugs that patients would never hear from their doctors. Of course everything should be vetted by a medical professional and information is given with the implied recommendation that a patient should do his own research and act only under a doctor's care. I've had 7 urologists/oncos and 2 ROs and found them all lacking an in depth knowledge of diagonistics, treatments and how PC works from a biological standpoint. After spending time with Dr Scholz and Dr Bahn it was readily apparent how much my other doctor's didn't know. When a doctor treats many types of cancers and other issues along with PC he just doesn't have the time to devote. A doctor that only treats PC and is involved with it 24/7 is simply just better informed.
I was DXed on my 12th biopsy with a 1 core <5% of 26 core biopsy just like Cwren. I was interviewing surgeons when my wife's oncologist insisted I see Dr Scholz before I did anything. He took one look at my biopsy report and said "this isn't cancer and most men over 50 have what was found on your biopsy. But looking at your 10 year history of psa I'm absolutely certain you have a severe case of PC that we just haven't found yet." He was right on and that small spot of G6 was never found again using a CDU targeted 3 core biopsy to the spot indicated. But it did find the 2.5 cm G7 tumor that Scholz predicted, in the area that he predicted it would be. The same information was available to all my other doctors at UCLA, UCI and UCSF but none had the knowledge to connect the dots and make the correct DX. I think the biggest difference is knowing which protocols to follow in reaching a DX vs a doctor that understands how PC works at the biological level and using that knowledge along with all other information to reach a DX and treatment recommendation.
Biologically, Cwren's cancer would be somewhere between HGPIN and very low risk cancer and is very predictable in how it will act. It will not suddenly mutate into a raging beast. It will either disappear, stay as it is for years or start growing slowly. A tumor has a DNA that stays consistant with that tumor, it will not morph into a higher grade nor will it's psa doubling time change which means it's growth rate is constant and predictable during its life. Given 3 or 4 psa readings over time a knowledgable doctor would be able to fairly accurrately predict exactly what Cwren's tumor would do and how fast it will grow. There are simple tools available to all doctors that calculate tumor volumes and growth rate for given gleason grades and psa values, yet they are only used by a handful of doctors. There are also a number of confirming scans such as an MRIS or a Color Dollper Ultrasound that are rarely recommended. It would be doubtful that Cwren's tumor would show up on any of these scans, and if it is not big enough to see on a scan it certainly is not big enough to hurt you, but the scans could be used as confirmation and as a baseline to monitor any future growth. I personally would never go on an AS program without a confirming CDU scan.

davidg,

I just reread my post to Cwren and I stand by my comment. If he spends enough time on this site the opinions, insights and perspectives he gets will include all of the following:

Consult a lot of cancer specialists....particularly an Oncologist with no treatment bias.
Have your bioply results verified by Bostwick, etc.
Be sure the doc you choose has done 500+ procedures.
Do your homework on SE's.
Other similar information from guys who have been there (whether you happen to agree with them or not).

Let's give Gwren credit for being able to use what he reads here to supplement what advice he gets from the professionals and experts he chooses to see.

Joe

Thanks JohnT. You just did a very good job of informing Cwren that he has a very good candidate for AS. If I may venture a non professional guess, I would say that his odds of not needing any treatment for 10 or 20 years are fairly good, especially if he would change his diet and exercise. Depending upon which treatment process he decides to go with, cwrens odds of having serious ED, incontinence, and/or proctititus are probably 20-30 percent. And cwren, Incontinence is one of the worse because it is with you 24/7 and your lover probably won't handle sex well if your dripping like a rain storm.

davidg,

I have been working with physicians for over 30 years. I have immense respect for them. However, I have learned that their knowledge bases differ incredibly. Pharmacists, nurses, physical therapists, respiratory therapists, social workers that work at hospitals will know which doctors are great, which are average and which are dangerous. These rules apply for internal medicine physicians, cardiologists and oncologists. My urologist is a great guy. We are very good friends, but he does not know the most recent literature surrounding prostate cancer. He told me with the greatest amount of sincerity, that my only good option was surgery (57 yo, G 3+4, 5/18 positive cores averaging 30%). His comment to me...radiation fails after 10 years. My radiation oncologist, also a friend of both, just shook his head and gave me 7 articles that contradicted my urologist's opinion. My radiation oncologist, told me that he felt he was very good at brachytherapy, but was not "world-class". He told me the guy I chose, is known by everyone in his field.

My point, you can not go by a physician and assume anything. JohnT is correct on this one. Many on this site, though not physicians, have a great deal of knowledge and insight that may benefit new posters.

Paul

Just a short note to clear-up one of the misconception (remnants from those who have still not differentiated “watchful waiting” from “active surveillance”) regarding the patient’s age and AS:  the longer the patient’s life expectancy, the more stringent should be the criteria, but youth alone is not a contraindication for active surveillance.

 

It would certainly appear — on the basis of the data you have provided — that you meet even the most stringent criteria for very low-risk PC.  It’s been stressed here and in other recent threads that AS is not for every case (and it may not be for you as an individual), but it is underutilized today for the pool of men for whom it would be the most appropriate solution...this is a clear fact. This is shifting with growing awareness (among both patients and doctors…yes, sorry to be the one to break the bad news, but not all doctors are fully versed in every aspect of everything), and will continue shifting, but it will not shift overnight...and there will always be a percentage of men who treat the name (“cancer”) rather than treat the disease. 

The main advantage of AS is an avoidance of the collateral damage and short-term, long-term, late-term loss of function (sexual; bladder control) that are associated with a decrease in the quality of life.  If AS is something you are interested in, we would suggest that you consult with a physician group that has considerable experience in the management of prostate cancer patients on active surveillance protocols before you made a decision.  If you decide to proceed with an aggressive treatment, we would similarly recommend that you consult with a highly experienced surgeon/radiation oncologist. 

Keep in mind that if you should further consider AS, it is possible that: (a) you might never need treatment at all; (b) you might not need treatment for years; (c) you might need treatment 6 months from now.  But, if you do follow AS and then later seek deferred treatment, you should also know that men who have followed similar paths have essentially the same outcomes as similar groups of men who seek immediate treatment.  Furthermore, you should also know that (as previously indicated) there are lifestyle choices (diet, exercise, stress reduction) which may help to influence a more favorable AS outcome…it did in fact influence the outcomes for a group of men recently studied at the Univ of Calif at San Francisco with case characteristis similar (or worst) than yours (read THIS). 

Probably the most important thing to keep in mind right now…from what you’ve indicated, you have absolutely no reason to rush into anything.

best wishes…